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Humira-- side effects

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Posted 4/23/2013 11:28 AM (GMT 0)
Ive been struggling with a UC flare for about a year an a half now, I've tried lots of different meds, and even switched doctors. Im not on 250mg of Imuran,1.2g of Lialda, and a Humira injection every other week. Ever since I started the Humira, (this will be my 9th week) I feel so tired all the time! At first I figured it was just because I work night shift, in the Emergency room running my butt off and with a screwed up appetite and not getting the best nutrition. I dont want to sleep my life away! Plus I get horrible headaches, and my kidneys will ache almost like I'm gonna get a kidney stone, all my blood work and UA tests come back good,I go in to see my doctor next week, i dont know what to do?? Anyone else feel like this with taking humira?
Posted 4/23/2013 3:38 PM (GMT 0)
I am hesitating starting humira, despite both gastro and rheummie wanting me on it. The side effects make me nervous!

If it's not helping as much as it is causing more problems, then talk to your doctor. Sadly, treatment can be trial and error. It bites, but it is.

Hope your doc can help answer your questions!
Posted 4/23/2013 7:23 PM (GMT 0)
I've been on Humira since mid-January...and I'm ALWAYS tired.  I thought it was just me, until I talked to my doctor and he said that he's not surprised.  Reading forums and talking to people, I've heard similar stories.

I used to be able to stay up until 1am-2am.  Now, I want to go to bed at 9pm.

I coach youth baseball and I use all available energy to coach the team.  I come home exhausted.  The good news is the medicine allows me to leave the house and/or the office.

Myself 09 - I was very nervous about the potential side effects, but in my case it came down to 3 options. 

1)  Do nothing...which means my intestines could completely block up.

2)  Have surgery...which I want to postpone as long as possible...there could be complications there.

3)  Start Humira.

I felt that option 3 was the safest because those are potential side effects...not guaranteed side effects.  The other two options were more scary.  That was my way of thinking.

Posted 4/24/2013 12:34 AM (GMT 0)
Hey Chewman-Thanks for the thoughts. I was close to just saying, yes, let's try, and then one of those commercials came on, with the dread list of side effects. My BF saw it with me, and got quite upset, which, of course, made me rethink it. I agree with your assessment, in truth. The arthritis and AS pain and exhaustion are bad right now. Something needs to be done, and it might be best to try.
Posted 4/24/2013 1:47 AM (GMT 0)
Has anyone tried Remicade? What are the side effects with it? That is still an option for me...i live about 2hrs away from my doctor so that was a big reason he wanted to try Humira first so I wouldnt have to travel, for the infusions.
Posted 4/24/2013 3:11 AM (GMT 0)
Hi :)

I am on remicade, I had narrowing of the ileum and peri anal fisutala which I had surgery for in Oct 2012. My dr put me on remicade in Nov 2012.

I honestly feel a million times better. Before I was on a restricted diet and was in pain the majority of the time. I can eat most foods now and saw relief after the first couple infusions. The only side effect I have noticed so far is that my hair is falling out, although right now we are trying to determine if is a delayed reaction from being so sick for the last six months of last year or the remicade, waiting it out to see. I do feel tired at times but I work full time and take two courses for school as well as volunteer on top of working out daily, so I think that may be my schedule (which thankfully I can do all the things now)  Some posts on here, people have mentioned feeling tired and having aches and joint pain from remicade as well. I think each biologic has side effects that vary from person to person.

Best of luck to you,

 

Posted 4/24/2013 3:34 AM (GMT 0)
Thanks for the reply! I worry about all the side effects, i also have hashimotos disease along with poly cystic ovarian disease, .....(yes i got the shaft when my parents decided to have another child)so i always wonder if any side effects are from new medications or from one of my other health issues. I also have a lot on my plate right now with working 2 jobs, flip flopping from day shift, to nights, going to school half time and trying to plan my own wedding. Having more tummy issues would be the last thing i need to deal with right now.
Posted 4/24/2013 4:13 AM (GMT 0)
Wow, yeah that is so much to deal with, Health issues on top of 'regular' life things make it super stressful sometimes.

Hope the health things settle for you and all the best with the wedding planning, super exciting!
Posted 4/24/2013 4:33 AM (GMT 0)
The one thing that I don't understand, they tell you to go off prednisone because of all the side effects but some doctors still keep you on some prednisone and add a couple more drugs with very serious side effects so it's a no win situation, you're dammed if you do, and dammed if you don't. 

I was on remicade and it felt like a truck rode over me.

Posted 4/24/2013 3:28 PM (GMT 0)
I've been on humira for nearly two years now and can honestly say I must be one of the lucky ones.I usually feel tired after I've done my injection on that day but don't feel tired all the time.Except if my blood pressure,folic acid or thyroid levels change.
Just a suggestion to get your B12 and folic acid levels checked.This sometimes cam cause tiredness too if low and us IBD sufferers are prone to vitamin deficient.
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